I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at jpitney@cmc.edu

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Monday, May 30, 2011

Asperger's and the DSM

Parker said the Asperger's diagnosis, which is used interchangeably with high-functioning autism, made it easier for her to get along with others -- even her husband and their four kids. "They could finally understand why I was a certain way. They said, 'Oh, that's why you're like that.'"

The American Psychiatric Association formalized the diagnosis of Asperger's in 1994, 50 years after it was first described by Austrian pediatrician Hans Asperger. But the association plans to remove the term "Asperger's" from its new diagnostic manual, set for release in 2013 -- a decision that has sparked criticism from advocacy groups.

"When the term 'Asperger's' started to get used, it was a tremendous relief for families of children and adults with the syndrome. They finally had a name for what was going on; they could finally understand what the struggle in their lives was about," said Dania Jekel, executive director of the Asperger's Association of New England. "My worry is that we'll go back 16 years to a time when folks with Asperger's syndrome will not be recognized."

But members of the American Psychiatric Association's Neurodevelopment Disorders Workgroup, the group spearheading the change, said removing the term "Asperger's" from its manual and instead refering to it as an autism spectrum disorder will help focus the diagnosis on an individual's special skills and needs at that moment in time.

The first line of this excerpt is misleading. People have used the term for one formof high-functioning autism that does not include language delay and instead involves one-sided verbosity and narrow interests. While all people with Asperger's have high-functioning autism, not everyone with high-functioning autism has Asperger's. The current controversy revolves around the question of whether this distinction is clinically useful. The point here is that people in the community have spoken of Asperger's as if it were a distinct disorder and have not used the term interchangeably with the broader category of HFA.